My name is Gordon Darroch. My two sons have both been diagnosed with Autism Spectrum Disorder (ASD). This is a blog about raising autistic children: the highs and lows, the joys and agonies, the hopes and fears, the sheer bloody-fingernailed exasperation and the "Eureka!" moments that every breakthrough brings. I hope that through writing this blog I can in a small way improve my own and other people's understanding of this often bewildering condition.

Wednesday, 30 January 2013

Ditch the bungee rope: on 'growing out' of autism

A few weeks ago a study came out that appeared to make
a startling claim: some children are capable of "growing out of autism". The phrase was widely used
across the media and intended, presumably, to confer hope on parents sitting at
home desperately trying to coax a few words, or a fleeting moment's eye
contact, out of their children. It implied that there was still hope that your
autistic child might one day become normal. I've always had a fancy for
rewriting the Pinocchio legend in
terms of autism, and these articles certainly gave me plenty of material.

On closer inspection there are a number of problems
with this assertion. Firstly, as Emily Willingham points out,
nowhere in the original paper in The Journal of Child Psychology and Psychiatry is the phrase "growing out
of autism" actually used (though the journal's editorial
does talk about 'recovery'). The scientific analysis is best left to people
who, like Emily, know how to do it. I'd merely observe, from my experience as a
parent, that while both my children have made good progress over the last few
years, neither of them are any less autistic than they were as toddlers. And
here's where we approach the real core of the issue.

Underpinning the notion of growing out of autism is an
unhealthy presumption that autistic people can only make progress if we can somehow
engineer them to be less autistic - to "grow out" of the condition.
We want to tie them to a bungee rope and drag them back towards normality.
(Having sprained an ankle the only time I tackled a bungee rope, I am only too
aware of the full implications of this metaphor). Rather than valuing their
abilities, we focus on their disabilities and how we can eradicate them. It's
indisputably a good thing if we can teach a non-verbal autistic person to speak
- or, failing that, to communicate by other means - but this doesn't mean
they've become less any autistic. It simply means that they've learned a new
skill.

And this is the truth about how autistic people
"grow out" of autism: they don't. Autistic adults who integrate into
society - and there are many who thrive - will talk about how they learned to
cope. They develop strategies so they can 'pass' regular society. They learn to
wear masks. Like emigrants who develop the ability to speak a second language
fluently, they can be adept with their acquired skills even if they never truly
resemble a native. In situations of extreme stress, or where they are forced
out of their learned routine, the autism can become as debilitating as it was
when they were children.

I question why this obsession with growing out of autism persists even
when we have agreed to stop assuming that people "suffer" from
autism. It suggests that we still have a way to go before we accept what
autistic people can contribute to our society and stop viewing them, tacitly,
as retarded or disadvantaged. The full name of the condition is Autism Spectrum
Disorder: the focus of the treatment should surely focus on the last word of
that phrase. There are plenty of examples of people who are on the autistic
spectrum and lead an orderly life. They should be celebrated not because they
have grown out of their autism, but because they have grown into it.

My friend Iris Johansson, who wrote the book "A different childhood" describes how she still, as a 67 year old woman with a successful career in conflict resolution and addiction therapeutics behind her, continually has to be on guard against falling into autistic stereotypy, always has to check her mental lists to know how to react in different situations, and always have some stimulus handy like some task to do, or person to talk to, or TV program to watch, in order to keep the emptiness away